POISCENTER

POIS Cause/Treatment Discussions => Auto-Immune Causes and Treatments => Topic started by: BuckarooBanzai88 on April 23, 2022, 12:12:39 PM

Title: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: BuckarooBanzai88 on April 23, 2022, 12:12:39 PM
tl;dr
I have serious gluten intolerance. I caused a serious iron deficiency (without anemia) which in turn caused me to have migraines every time I had an orgasm. After removing all gluten from my diet and receiving several iron infusions, my POIS symptoms are 100% gone without any drugs. Apparently, I also had low vitamin b3/niacin so I supplement with niacinamide which seemed to help some with symptoms as well. Finally, I noticed that caffeine makes my migraines much worse. So I've removed that from my diet.

Perhaps unrelated to POIS, I also have trouble processing vitamin B5. I take pantothenic acid and pantetheine at the same time to compensate. But I can't take too much or they cause anxiety/sleep problems.

Treatments:


Longer Version
My symptoms are all part of Cluster 1 and for them, I've taken prednisone and other steroids to cope.  I've done this for years now.

I've seen MANY different types of doctors, but I recently visited a neurologist for the first time.  He suggested my symptoms are very similar to migraine symptoms.  I had no idea migraines could cause depression, difficulty finding words, brain fog, clumsiness, anxiety, fatigue, irritability, sensitivity to noise, and memory problems.

But evidently, they can.  So he suggested I try a new migraine medication.  I had the option of trying one of the injectables or an oral, short lasting formulation.  I chose to take Nurtec ODT.  It's an orally dissolving tablet with an 11 hour half life.

There also exist injectables that stay in your system longer than a month.  I didn't want to risk having a bad reaction and being unable to recover for more than a month. 

But Nurtec seems to be working for me.  The first time I took it, I took it WITH prednisone and had no symptoms for the first time (I should add that 60mg of prednisone also removes all symptoms, but you can't take that much all the time).

The second time I took it WITHOUT prednisone and had no symptoms. It's only been two times, but I wanted to share the news early in case it helps someone else.  I'll certainly report back if it stops working.

But these are very expensive medications.  It's going to be difficult for me to get insurance to cover the costs, but I think there's a path forward there by trying a number of other migraine medications.

I should also add that I'm still on the AIP diet which has always helped tremendously.  I'll try reintroducing foods and let you know if that causes Nurtec to work less effectively.


EDIT:
Sumatriptan also seems to help

EDIT:
After iron infusions, I don't have POIS symptoms anymore. No more drugs.

EDIT:
Sadly, the symptoms came back, albeit with significantly reduced intensity. I get migraine symptoms (fatigue, unilateral nerve pain in 2-3 random places on my head, slight brain fog). I take sumatriptan currently, but I'll probably be going back to 10mg prednisone. The symptoms always happen one day after orgasm and last about 12-18 hours. Maybe a bit longer sometimes.

I'm thinking of getting migraine botox injections next to see if that helps. I'm treating my symptoms as a migraine triggered by orgasm. That's seemed to be helpful. I also recently learned I had a mild b12 deficiency so perhaps that's had something to do with the iron issues. I'll update here if b12 helps with my symptoms.

Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: demografx on April 23, 2022, 05:31:32 PM
BuckarooBanzai88, congratulation on your early success!
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: Muon on April 26, 2022, 01:42:00 PM
Heather1111 (https://www.reddit.com/r/POIS/comments/hgknmc/women_with_pois/):

"So are there any other women in here? I see this is mostly a man issue. I just came across this whole pois term for the very first time and it is completely me. I've been suffering with what I have been calling sex migraines for almost 5 years now."
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: BuckarooBanzai88 on April 26, 2022, 02:19:34 PM
Thanks Demo!

@Muon, I let Heather know about Nurtec.  Thanks for pointing that out!
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: Muon on April 26, 2022, 02:24:39 PM
@Muon, I let Heather know about Nurtec.  Thanks for pointing that out!
Yes, good idea.
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: POISed2cure on May 19, 2022, 03:36:33 AM
Amazing!!! Keep us posted. I feel a headache coming on immediately after orgasm, but have learned over time to prevent it from becoming a total migraine. Whatever is causing that migraine would be the same mechanism that causes other symtoms which also appear immediately after more or less.
May give Nurtec a try too if I can find it here!
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: POISed2cure on May 23, 2022, 01:07:35 AM
Buckeroo, did you take Nurtec before or after O?
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: BuckarooBanzai88 on June 20, 2022, 08:55:43 PM
I'm so sorry I didn't see this!

My symptoms come on an hour or more after orgasm so it doesn't matter if I take the Nurtec before or after orgasm.  It seems to still be working better than anything else I've tried. 

I hope you're able to try it, that it's helpful, and then that you can get insurance to pay.  I'm still doing battle with my insurance company.
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: Muon on January 26, 2023, 10:53:09 AM
https://twitter.com/migraiNO/status/1618036598872080384

Quote:
@Orgasmicillness since using #Emgality not only #Migraine stopped but also #pois like symptoms seem to be much less (if at all) Has this been researched already?

https://en.wikipedia.org/wiki/Galcanezumab
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: Hopeoneday on January 28, 2023, 08:56:32 PM
Then, pub med says: what triggers the release cgrp?

Activation of trigeminal nerves causes initial release of CGRP and other neuropeptides that promote release of inflammatory mediators. The inflammatory mediators, including TNF-?, further increase CGRP synthesis and release via MAPKs.
Neurological inflamatory part of pois?
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: Enix on January 29, 2023, 04:19:16 AM
Hello  :)

Available in France ?

Thank you
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: demografx on February 19, 2023, 11:03:33 PM

…At this point, I take ~8000 IU of vitamin D a day (+ supporting supplements like magnesium, K2, and B5). Nurtec, Prednisone, and Sumatriptan whenever I have an orgasm. That seems to keep symptoms mild and mostly limited to a single day.


BB88, many thanks for sharing with us your successful protocol.

Mild/one-day symptoms took me and  many others years  to achieve!
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: Quantum on February 21, 2023, 11:40:38 PM
HI BB88,

Are you still on your AIP diet, or just using your supplements and medication, now ?
Title: Re: Cluster 1 - Migraine - CGRP Inhibitors (Success)
Post by: BuckarooBanzai88 on April 11, 2023, 02:22:23 AM
Hey Quantum,

I’m so sorry I missed this!

I’m slowly weening myself off the AIP diet. At this point I still don’t eat nightshade or gluten/grains (except rice).

I’m still finding migraine medication to work better than most things so long as I keep my vitamin D levels up.

I don’t know if I mentioned this, but I took a Spectracell micronutrient test and trying to address some of my nutritional deficiencies has also helped a lot with my baseline energy levels.

Specifically vitamin d, b5, and most recently alpha lipoic acid. All of which I was deficient in. I think ive got some weird metabolic stuff going on because I’ve proven to be very sensitive to all of those supplements.

Anyway, that’s way more than you asked, but I figured I’d share other things that've been helpful.

Title: Re: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: BuckarooBanzai88 on September 21, 2023, 03:12:15 PM
I've updated my initial post to reflect my new findings. My ferritin had been 17 ng/ml. My symptoms resolved after of 900mg of iron sucrose infused over 5 different sessions (200, 200, 200, 100, 200).
Title: Re: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: demografx on September 21, 2023, 10:29:55 PM

I've updated my initial post to reflect my new findings. My ferritin had been 17 ng/ml. My symptoms resolved after of 900mg of iron sucrose infused over 5 different sessions (200, 200, 200, 100, 200).


Congratulations!
Title: Re: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: BuckarooBanzai88 on September 24, 2023, 12:57:41 PM
Thank you very much!
Title: Re: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: Enix on September 27, 2023, 01:42:55 PM
I've updated my initial post to reflect my new findings. My ferritin had been 17 ng/ml. My symptoms resolved after of 900mg of iron sucrose infused over 5 different sessions (200, 200, 200, 100, 200).

Congratulations  8) 8) 8) 8) 8) 8) 8) 8)
Title: Re: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: BuckarooBanzai88 on September 30, 2023, 01:45:53 PM
Thank you very much! Never thought I'd see the day to be honest.
Title: Re: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: Enix on October 03, 2023, 02:54:14 PM
your blood test shows gluten intolerance ?
Title: Re: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: BuckarooBanzai88 on November 10, 2023, 01:58:59 PM
your blood test shows gluten intolerance ?

I have had IgG tests that show a gluten intolerance. I've never been tested for celiac disease with a biopsy so I don't know if I have that.

What I know for sure is that if I eat gluten, I get bad POIS-like symptoms for a 1-1.5 weeks.
Title: Re: My POIS = Gluten Intolerance -> Iron Deficiency -> Migraine
Post by: Warrior on November 10, 2023, 02:05:45 PM
your blood test shows gluten intolerance ?

I have had IgG tests that show a gluten intolerance. I've never been tested for celiac disease with a biopsy so I don't know if I have that.

What I know for sure is that if I eat gluten, I get bad POIS-like symptoms for a 1-1.5 weeks.

I was sensitive to just about all plant foods, gluten being the worst. Nanna1’s protocol fixes the sensitivities and POIS, as long as I take the SAM-e. The food sensitivities and POIS are tied together (at least for me).